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Lyme or not???
May 4, 2007
Hi All,
I am new to the board and would like some advice on Lyme disease as you seem to all be more knowledgeable than most doctors.

My health battle started last november. I woke up one afternoon with a nap with my son and my right leg just went from under me. It took maybe a minute or so to be able to get up again. Didn't think much of it, wrote it off as my leg was probably asleep, got up to fast, etc. But later that day more weird things started to happen, pins and needles, numbness, tingling, weakness. This started from my right leg and slowly moved up my whole rightside. By the time I went to bed my whole right side felt different than my left. Woke up the next morning still feeling weird and decide to see a GP. That was the start of the numerous test. GP did CAT scan to rule out TIA. Scan was normal so referred me to a neurologist (#1). Saw the neurologist the following day and had improved some. He sent me for an MRI and numerous other test. Had the MRI the same day as my appointment with him. Later that same day after having approved some, I went rapidly downhill. My right leg wouldn't move properly and had the most abnormal gait. Saw the neurologist the next day and was diagnosed with a variant migraine, as my MRI of my brain was normal, was sent on my way with promises that I would be better within two weeks. Not so sure about his diagnosis, I went for a second opinion a couple days later. Neurologist (#2) was not as confident about it being a migraine and sent me for more tests, MRI of spine, evoked potentials all that fun stuff. All that came back normal.
He then said maybe the first doctor was right and it was a migraine and seeing as two weeks had passed it wasn't uncommon for them to last 6 weeks. Was sent on my way again. Well a couple weeks later I was admitted to the hospital by my GP as I was getting worse, twitching, pins and needles, numbness, gait problems that had now include both legs, cramps, eye pain, cognitive problems, the list goes on. Doctors think MS, then not as all my tests were normal. Sent home the next day, which was good as I hate hospitals. GP talks to Neurologist (#2). Tells her maybe I have a conversion disorder??? Like I want to feel like this. That really made the blood boil.
So on neurologist advice started to go to physical therapy, which over the next month helped me get my gait problem under control. Had to walk with a cane, which at 28 had a hard time dealing with. My gait problems resolved in January, though the twitching, cramps, eye pain and a new symptom of leg pain were worse than ever. Saw neurologist (#2) late January and he said he was convinced I had a muscle membrane problem?? and to take some calcium and it will resolve itself. Which it didn't, by mid Feb gait problem was back. Saw another 2 more neurologist one who it was in my head, the other not sure what was wrong, when I would get better or if I did that I wouldn't relapse. Gee, thanks for some answers.

Anyways, through out this ordeal I have been glued to ****** looking up everything. I had stumbled across lyme as a possiblity but excluded it as I live in Singapore. Then months later it finally dawned on me that 2 months before I had been back home in Canada. As we were on holidays myself and my children had spent a lot of time out doors in the beautiful fall weather. Had I been bitten by a tick???
Asked my GP about lyme, as there are little or no cases here she said it was unlikely. Lyme causes a rash, sore joints, you would had flu like symptoms. Well I don't remember a rash, my joints are sore also and my is so bad I don't remember what I had for dinner last night, so if I doubt I would remember if I had flu like symptoms 6 months ago. Convinced her to do a lyme test.
She agreed, test came back negative (ELISA). Still not feeling any better went to see a Canadian doctor who works here in Singapore to discuss the Lyme issue, as I read the test were unreliable. After a little convincing - I had gone armed with literature on lyme - he agreed to do a western blot and to try some doxy.

So I have been taking the doxy for 8 days. After about 3 days the gait resolved, but the rest remains. Also since being on the antibiotics every lymph node in my body is sooooo sore, I assume it is because I'm fighting something. Waiting for test results as that will determine if my new doctor will treat me after the 2 weeks of antibioics. I'm a little nervous as I feel my body if fighting something and just because my test is negative that doesn't mean I don't have lyme...right??


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